Quality of life data for individuals affected by spinal muscular atrophy: a baseline dataset from the Cure SMA Community Update Survey.

ABSTRACT:

Background

Individuals and/or caregivers of individuals affected by spinal muscular atrophy (SMA) completed the 2019 Cure SMA Community Update Survey, online, assessing health-related quality of life (HRQoL), loss of work productivity, and fatigue using the Health Utilities Index Questionnaire (HUI), the Work Productivity and Activity Impairment Questionnaire (WPAI), and the Patient Reported Outcomes Measurement Information System Fatigue Short Form (PROMIS Fatigue SF), respectively. The purpose was to collect baseline quality of life results among individuals affected by SMA using the above Patient Reported Outcome Measures (PROMs).

Results

Of 666 surveys completed between March and May 2019, 478 were included in this analysis, accounting for duplicates, missing data, or de

SUBMITTER: Belter L 

PROVIDER: S-EPMC7447573 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature